https://orcid.org/0000-0001-9272-2323
Figures
Abstract
Background
Adolescence and young adulthood are high risk periods for kidney transplant recipients. The reasons for this are complex; but are predominantly thought to be due to poor adherence to immunosuppressive medications. Patient education can help support young recipients to reduce their risk of behaviour-related transplant loss. The aim of this review was to understand what is known about education interventions targeted at adolescent and young adult kidney transplant recipients.
Methods
Systematic scoping review methodology was utilised. Six online databases were searched for suitable articles. Articles were selected for full text review following title and abstract screening. Articles deemed eligible to be included in the review had data extracted, which were qualitatively analysed using thematic analysis. Findings were validated through a consultation exercise with both young recipients and healthcare professionals.
Results
29 studies were eligible for inclusion in the review. There was a high level of heterogeneity in the content, mode, design, and measurement of efficacy of interventions in the selected studies. Traditional face-to-face education and transition clinics were the most common educational interventions. Using technology to enhance patient education was also a major theme identified. Few studies reported using educational theory or involving patients in intervention design.
Discussion
Four key research gaps were identified. 1.) Lack of educational theory in intervention design 2.) Lack of patient/ stakeholder involvement 3.) Identifying best way to measure efficacy 4.) identifying novel future research questions within already well established paediatric and educational frameworks. Addressing these gaps in future research will help inform best-practice in this vulnerable population.
Citation: Corr M, McKeaveney C, Wurm F, Courtney A, Noble H (2023) Patient education interventions for adolescent and young adult kidney transplant recipients- a scoping review. PLoS ONE 18(7): e0288807. https://doi.org/10.1371/journal.pone.0288807
Editor: Edward Zimbudzi, Monash University, AUSTRALIA
Received: February 3, 2023; Accepted: June 29, 2023; Published: July 17, 2023
Copyright: © 2023 Corr et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the paper and its Supporting information files.
Funding: The authors received no specific funding for this work.
Competing interests: The authors have declared that no competing interests exist.
Background
Adolescence and young adulthood represent a high-risk period for kidney transplant recipients [1]. Potential increased immunological activity combined with suboptimal adherence to important immunosuppressive medications puts young recipients at increased risk of premature graft loss [2,3]. Post-transplantation adolescents and young adults enjoy the best short-term outcomes of any age cohort; however, they have the highest rates of graft loss in the long-term [4]. The reported median survival of a deceased donor kidney in the whole population is 10 years vs. 7 years in young adults [5].
The challenges following premature transplant loss in this age group are profound. The return to dialysis is associated with high morbidity and mortality [6]. Re-transplantation is often complicated by the development of Human Leukocyte Antigen antibodies meaning young people may face many years on dialysis before a suitable kidney is available [7]. All this occurs in the context of the young person’s life which is rapidly changing where dialysis can severely disrupt key life events such as, increasing independence from parents, ongoing education, entering work, development of non-familiar relationships and starting families of their own [8,9].
Prevention of premature graft loss in adolescent and young adult transplant recipients can be challenging. Interventions are usually focussed on patient education and self-management given their reported poor adherence to medications and high risk of being lost to follow-up [10]. Patient education initiatives are often complicated by high rates of mental health conditions in young transplant recipients potentially exasperated by the COVID-19 pandemic as seen in others with chronic health conditions [11,12]. Often those that require the most assistance psychologically are the same individuals who find it most difficult to engage with services [13]. Further challenges arise due to the impact that end-stage kidney disease (ESKD) has on neurocognitive development of young people and learning disabilities associated with syndromes linked to the development of ESKD at a young age [14]. Healthcare professionals, often seen as authoritative figures, can find themselves central to a young person’s rebellion hindering meaningful interaction [15]. This can be further complicated when care has been transitioned from paediatric to adult services where relationships between recipient and staff are new. Transition has long been associated with increased risk of adverse events in both transplant recipients and other chronic diseases [16].
Given the challenges; those tasked with assisting adolescent and young adult transplant recipients have radically changed their clinics and education programmes. Many services now offer specific clinics for adolescents and young adults with an enhanced multidisciplinary team including social and youth workers [17]. Others have used the opportunities technology has provided to engage with young recipients [18]. In the United Kingdom, the transition process has been overhauled with formal transition programmes such as, “Ready, Steady, Go” to prepare young people moving from paediatric to adult care [19]. There has been an increase in research reporting patient education interventions and a new focus on patient centred studies and outcomes through initiatives such as SONG-kids [20].
The aim of this scoping review is to systematically map the literature related to any form of patient education interventions for adolescent and young adult kidney transplant recipients. This will provide a comprehensive summary of the varying patient education interventions that have been reported whilst also allowing a critical reflection on remaining challenges and gaps yet unanswered in the existing research.
Methods
A scoping review methodology was selected given the expected heterogeneity of patient education interventions. A scoping review is a form of knowledge synthesis which maps out key concepts, types of evidence and gaps in a research field in a systematic manner. This study was completed adhering to the methodological recommendations and steps as laid out by Colquhoun et al., 2014, Levac et al., 2010, Arksey, 2005 [21–23]. Reporting of the review was completed in conjunction with the guidance of PRSIMA extension for reporting scoping reviews [24]. The completed PRISMA checklist can be viewed in the S1 Table.
Eligibility criteria
All primary research reporting patient education interventions for adolescent (defined as aged 11–18 by World Health Organization) and/or young adult (defined as aged 18–24 by World Health Organisation) kidney transplant recipients were eligible for inclusion. For the purposes of this review education intervention was defined as a change in practice or novel method in delivering patient education. All study designs were included as eligible; professional reports and editorials were not included. Studies which included other solid organ transplant recipients were only included if the data pertaining to only kidney transplant recipients could be separated.
Search strategy
A search strategy was designed with the assistance of a medical librarian. Six online databases were searched for relevant articles- OVID-Medline, EMBASE, Web of Science, Scopus, CINAHL, PsycInfo from inception until 15th December 2022. A targeted grey literature search was also conducted. An example search strategy can be viewed in the S2 Table.
Study selection and data extraction
Following the online search of databases titles and abstracts were reviewed for appropriateness for full-text review against the inclusion criteria by two reviewers. Full text review was conducted independently by two researchers. Where there was disagreement regarding inclusion or exclusion of a study consensus was reached by the two researchers. Where consensus was not reached arbitration was achieved via a third-party member of the study team.
Data were then extracted from each included article using a pre-designed data extraction tool. Where a review article was found references were reviewed for possible inclusion in the study. A completed extraction tool can be found in the S3 Table.
Data analysis
A mixed methods approach was taken for data synthesis as data identified was both quantitative and qualitative in nature. The mixed methods approach described by the Joanna Briggs Institute for mixed method data analysis in synthesis reviews was adopted [25]. Convergent integration of the data was applied, i.e., quantitative data was extracted and transformed into textual descriptions to create qualitative data for analysis. This allowed the newly formed qualitative data from quantitative studies and the data from qualitative studies to be coded using traditional content thematic analysis [26]. Scoping review methodology assessment of study quality or for potential biases was not conducted as per guidelines.
Results of the thematic analysis were validated via a consultative exercise with young transplant recipients and healthcare professionals involved in transplant education currently as prescribed by the scoping review methodology. Key findings from the scoping review were presented to the group and reflections of their own experiences and challenges in transplant education were discussed to assess thematic validity.
Results
A total of 29 articles were eligible for inclusion in this scoping review. A PRISMA flow chart demonstrating stages of article selection can be found below (Fig 1) [27].
From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021; 372:n71 doi: 10.1136/bmi.n71. For more information, visit: http://www.prisma-statement.org/.
Study characteristics
Of the 29 articles included 14 articles had both adolescent and young adult participants [28–41], 13 were studies that only included adolescents [42–54] and only two studies exclusively recruited young adults [55,56]. Most of the studies were based in North America (17 studies) followed by Europe (10 studies) and a single study from both Israel [34] and Australia [36]. There were a range of both qualitative and quantitative methodologies utilised. Five studies were qualitative based [34,36,38,39,45], 3 studies used a mixed-methods approach [47,50,56] whilst the rest were quantitative in design. There were four randomised-controlled trials [29,33,46,49]. Most of the studies were small single centre studies that were observational post-intervention or cross-sectional in design. Several studies were retrospective observations years after the intervention to assess impact on clinical outcomes [32,42,48,51,54,55].
Content of education delivered
The primary focus of most studies was increasing adolescent and young adults’ health knowledge of their condition. Interventions aimed to develop understanding and hence self-management skills of young recipients and assist them in taking more responsibility for their care [35,46,55]. Many of the education interventions were focussed on increased knowledge of medications taken by the recipients, including their role in managing their transplant as well as potential complications and side effects [30,32]. Two studies aimed to increase emotional wellbeing, educate on mental health issues, or assist young recipients to develop coping mechanisms/ resilience [39,41]. Two studies aimed to educate and encourage young recipients to increase their physical activity and improve cardiovascular health [28,53]. A single study aimed to educate young recipients about appropriate hydration and water intake [49]. There was one study that aimed to address sun-health education given the high risk of skin cancers in this cohort [29], whilst another study investigated contraceptive/ reproductive health education female transplant recipients received [40].
Education mode
A range of modes of education were used for adolescent and young adult transplant recipients, with some studies using a combination of approaches. Most of the education was delivered in a traditional face-to-face format where either the researcher or a member of the healthcare team gave education directly to the patient and/or their family [35,55]. The training or specific role of those providing the education was often poorly described however within healthcare teams members of nursing staff most often provided the education [29,35]. Some studies used small groups to deliver education to recipients with in-built peer-support and education [36] or emotional wellbeing used therapy/counselling sessions [43]. Ten studies in total used technology as part of their interventions. Technological modes for education delivery ranged from online-based education programmes/resources to the use of devices including pedometers, video games, electronic water bottles and electronic pill boxes to promote health behaviours [28–30,47,48,53]. Very few studies investigated outcome differences related to mode of education, indeed many of the technology-based studies reported were feasibility/acceptability studies. Bottcher et al. did compare different modes of education and found an integrated model combining both online learning with face-to-face sessions was more effective than online sessions alone [29].
Educational interventions models and designs
Most articles in this review did not provide any information on educational design, theoretical models or guiding principles on which programs were based. One study utilised the teach-back method to assess what the patient had learnt and to identify ongoing knowledge gaps [30]. One further study used, “Action-Focused Problem-Solving,” methodology as a framework for identifying and solving problems related to adherence [32,33]. Studies related to adherence of medications often used the health belief model to understand potential barriers to adherence and based their interventions on this understanding [45]. The amount (6) of studies that specifically outlined stakeholder exercises or involvement of patients in co-design of their interventions was limited [32,33,36,38,46,47].
There was a wide heterogeneity in the amount of information provided by individual studies regarding their interventions. Most only briefly mentioned their interventions, whilst some authors fully outlined and described complex interventions like transition clinics, content of e-learning or workshops; helping to contextualise their findings and improve reproducibility [33,47]. Transition clinics were the most common intervention described in the studies though these ranged in the type and delivery of education delivered; some were primarily health focussed whilst others included social/youth workers who covered a range of topics from relationships, career goals and sexual health [30,35,36]. E-learning through web-based platforms was the second most studied intervention [29,35,44], though these were often linked with further interventions such as coaching sessions. Full details on each individual study’s intervention can be found in the S3 Table.
Outcomes measured and their effectiveness
Three studies focussed on educational-based outcomes: ranging from validated knowledge assessments taken pre and post intervention and questionnaires/interviews assessing participants confidence in individual topics [29,30]. Few studies included educational outcomes as part of their analysis, however this was not their primary aim [36]. Ten studies investigated outcomes related to psychological wellness, whether through diagnosis of mental health conditions, validated psychometric testing or qualitative interviews to establish if emotional well-being was improved [36,39,41]. Most studies investigated quantitative clinical outcomes such as rate of graft loss, improvement in physiological markers, medication adherence or rates of rejection in their populations [28,47,55].
All studies included in the review reported positive outcomes for their interventions except two which reported no difference between intervention and non-intervention groups [47,48]. The individual quality of each study was not assessed in this review given the scoping review methodology; however, it is important to note the relatively small numbers of participants included in most studies (range of participants 4–440, median number of participant 32). Furthermore, often interventions such as transition clinics were complex and multifaceted in nature making it difficult to assess which component was attributable to the effect observed [35,48,55].
Discussion
This systematic scoping review demonstrates the educational interventions studied within the literature for adolescent and young adult kidney transplant recipients. Despite a small number of studies reporting interventions there is huge diversity in mode of education, content, design, and outcomes measured. Whilst most studies demonstrated benefits to their intervention, they were often with limited numbers of participants from a single centre.
The most notable knowledge gap identified is the minimal focus on educational theory in the design of interventions and ensuring emphasis high quality education was provided. Few studies involved evidence-based education methods or learning theories [30,32,33]. Few appeared to engage patients with active learning, which has been proven to help learners gain a deeper understanding of content [57]. Most studies failed to include details of how educational information or resources were quality checked or designed with best-practice guidance [58]. Perhaps, given some of the interventions involved e.g., transition clinics, researchers did not consider these as educational interventions. And whilst true that transition clinics have many roles (follow-up, communication between different clinical teams); education and engaging patients is a central component that should be carefully considered in their design [19].
Of note, few studies involved young transplant recipients in the design of their interventions. Limited studies included stakeholder exercises with an aim to understand participants’ educational requirements. Such studies benefited by gaining a deeper understanding of the issues faced by patients and were able to demonstrate how they tailored interventions to meet their needs [32,46]. In recent years there has been an increased focus on including the patient’s voice in trial design and working groups such as SONG-Kids have assisted in helping researchers identify key priorities for young people [20]. There was a predominance of studies from North America and Europe included in this review. There was a marked paucity of research in developing countries and in populations known to require additional patient education support e.g., lower socioeconomic groups and children of immigrants [59]. Within patient education there is an awareness that sociocultural factors can have a significant impact on the effectiveness of interventions [59]. Hence, novel tools described in the literature may translate poorly to other sociocultural and healthcare settings. This should be carefully considered and again, where active involvement of patients in local service design can increase the chance of success. How technology could be used to overcome barriers to patient education in underserved populations (lower socioeconomic classes, populations with less healthcare infrastructure) could be another fruitful area for future study.
Given the clinical challenges in managing young kidney transplant recipients it is perhaps unsurprising researchers were keen to measure effectiveness by clinical outcomes such as graft function and rates of rejection episodes [55]. This however presents challenges, such as, low patient numbers, low clinical event rates (rejection) and the need for long periods of observation following intervention. Given the issues raised above it may be prudent for future research to focus on educational quality and education related outcomes primarily before assessing for clinical related efficacy. Further to this, future work should be guided from previous research in both healthcare and education fields. Transition clinics are well established practice with a significant evidence base supporting their use [19], as has the use of web-based learning in a variety of both patient education and general education research [60]. Creating, well designed need-specific educational interventions for young transplant recipients and identifying best practice within these established frameworks (transition, online education) is of crucial importance. Inclusion of researchers with backgrounds in educational theory and methodology in future study designs may be particularly beneficial.
This review is limited by the fact that English-only manuscripts were included however this did not appear to cause the exclusion of any articles during the selection process. As with the scoping review methodology the individual quality of each study was not assessed. This limits the ability of this review to comment on overall effectiveness of individual interventions. However, it does highlight potential limitations of some of the studies included and where methodological gaps exist. A recent Cochrane review of interventions to address adherence to immunosuppressants in all solid organ transplant recipients (adult and paediatric) concluded that overall, the methodological quality of studies was often poor with high heterogeneity in interventions studied which limited the ability to best inform practice [61].
Conclusions
Patient education is paramount to reduce adverse incidents in adolescent and young adult kidney transplant recipients. This scoping review has systematically outlined the current literature on patient education interventions for this population. It highlights knowledge gaps such as 1.) Lack educational theory and quality control 2.) lack of patient involvement in study design 3.) careful consideration of how to best measure intervention efficacy 4.) identifying novel future research questions within already well established paediatric and educational frameworks. Addressing these knowledge gaps with future research may help to inform clinicians on how to best design educational programmes for this vulnerable population.
References
- 1. Samsonov D, Briscoe DM. Long-term care of pediatric renal transplant patients: from bench to bedside. Curr Opin Pediatr. 2002 Apr;14(2):205–10. pmid:11981291
- 2. Akchurin OM, Melamed ML, Hashim BL, Kaskel FJ, Del Rio M. Medication adherence in the transition of adolescent kidney transplant recipients to the adult care. Pediatr Transplant. 2014 Aug;18(5):538–48. pmid:24820521
- 3. Fernandez HE, Amaral S, Shaw PA, et al. The effect of transfer to adult transplant care on kidney function and immunosuppressant drug level variability in pediatric kidney transplant recipients. Pediatr Transplant. 2019 Sep;23(6):e13527. pmid:31209988
- 4.
UK Renal Registry (2021) UK Renal Registry 23rd Annual Report–data to 31/12/2019, Bristol, UK. renal.org/audit-research/annual-report.
- 5. Pankhurst T, Evison F, Mytton J, Williamson S, Kerecuk L, Lipkin G. Young adults have worse kidney transplant outcomes than other age groups. Nephrol Dial Transplant. 2020 Jun 1;35(6):1043–1051. pmid:32459843.
- 6. McCaughan JA, Patterson CC, Maxwell AP, Courtney AE. Factors influencing survival after kidney transplant failure. Transplant Res. 2014 Sep 24;3:18. pmid:25276347
- 7. Bellini MI, Courtney AE, McCaughan JA. Living Donor Kidney Transplantation Improves Graft and Recipient Survival in Patients with Multiple Kidney Transplants. J Clin Med. 2020 Jul 5;9(7):2118. pmid:32635614
- 8. Bailey PK, Hamilton AJ, Clissold RL, et al. Young adults’ perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studies. BMJ Open. 2018 Jan 10;8(1):e019926. pmid:29326196
- 9. Hamilton AJ, Clissold RL, Inward CD, Caskey FJ, Ben-Shlomo Y. Sociodemographic, Psychologic Health, and Lifestyle Outcomes in Young Adults on Renal Replacement Therapy. Clin J Am Soc Nephrol. 2017 Dec 7;12(12):1951–1961. pmid:29051144
- 10. Melanson TA, Mersha K, Patzer RE, George RP. Loss to Follow-up in Adolescent and Young Adult Renal Transplant Recipients. Transplantation. 2021 Jun 1;105(6):1326–1336. pmid:32890129
- 11. Amatya K, Monnin K, Steinberg Christofferson E. Psychological functioning and psychosocial issues in pediatric kidney transplant recipients. Pediatr Transplant. 2021 Feb;25(1):e13842. pmid:33012109
- 12. Benatov J, Ochnik D, Rogowska AM, Arzenšek A, Mars Bitenc U. Prevalence and Sociodemographic Predictors of Mental Health in a Representative Sample of Young Adults from Germany, Israel, Poland, and Slovenia: A Longitudinal Study during the COVID-19 Pandemic. Int J Environ Res Public Health. 2022 Jan 25;19(3):1334. pmid:35162364
- 13. Wurm F, McKeaveney C, Corr M, Wilson A, Noble H. The psychosocial needs of adolescent and young adult kidney transplant recipients, and associated interventions: a scoping review. BMC Psychol. 2022 Jul 29;10(1):186. pmid:35906706
- 14. Ferris ME, Miles JA, Seamon ML. Adolescents and Young Adults with Chronic or End-Stage Kidney Disease. Blood Purif. 2016;41(1–3):205–10. pmid:26765837
- 15. Quinn SM, Fernandez H, McCorkle T, et al. The role of resilience in healthcare transitions among adolescent kidney transplant recipients. Pediatr Transplant. 2019 Nov;23(7):e13559. pmid:31441191
- 16. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011 Jun;96(6):548–53. pmid:21388969
- 17. Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol. 2012 Feb;27(2):295–302. pmid:21823039
- 18. Radovic A, Badawy SM. Technology Use for Adolescent Health and Wellness. Pediatrics. 2020 May;145(Suppl 2):S186–S194. pmid:32358210
- 19. Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: Ready Steady Go. Arch Dis Child Educ Pract Ed. 2015 Dec;100(6):313–20. pmid:26063244
- 20. Hanson CS, Craig JC, Logeman C, et al; SONG-Kids consensus workshops investigators. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops. Kidney Int. 2020 Sep;98(3):553–565. pmid:32628942
- 21. Colquhoun HL, Levac D, O’Brien KK, et al. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014 Dec;67(12):1291–94. pmid:25034198
- 22. Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010 Sep 20;5:69. pmid:20854677
- 23. Arksey H , O’Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005 Feb;8(1):19–32.
- 24. Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018 Oct 2;169(7):467–73. pmid:30178033
- 25. Pearson A, White H, Bath-Hextall F, Salmond S, Apostolo J, Kirkpatrick P. A mixed-methods approach to systematic reviews. Int J Evid Based Healthc. 2015 Sep;13(3):121–31. pmid:26196082
- 26. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005 Nov;15(9):1277–88. pmid:16204405
- 27. Page MJ, McKenzie JE, Bossuyt PM, Boutr , et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. pmid:33782057
- 28. Akber A, Portale AA, Johansen KL. Use of pedometers to increase physical activity among children and adolescents with chronic kidney disease. Pediatr Nephrol. 2014 Aug;29(8):1395–402. pmid:24648129
- 29. Böttcher S, Buck C, Zeeb H, et al. Randomised controlled trial to evaluate the influence of mHealth and eHealth skin cancer prevention education among young organ transplant recipients: the HIPPOlino intervention study. BMJ Open. 2019 Dec 16;9(12):e028842. pmid:31848158
- 30. Chandar JJ, Ludwig DA, Aguirre J, et al. Assessing the link between modified ‘Teach Back’ method and improvement in knowledge of the medical regimen among youth with kidney transplants: The application of digital media. Patient Educ Couns. 2019 May;102(5):1035–1039. pmid:30622001
- 31. Dabirzadeh A, Dahhou M, Zhang X, et al. Care processes and structures associated with higher medication adherence in adolescent and young adult transplant recipients. Pediatr Transplant. 2021 Dec;25(8):e14106. pmid:34339090
- 32. Foster BJ, Pai ALH, Zelikovsky N, et al. A Randomized Trial of a Multicomponent Intervention to Promote Medication Adherence: The Teen Adherence in Kidney Transplant Effectiveness of Intervention Trial (TAKE-IT). Am J Kidney Dis. 2018 Jul;72(1):30–41. pmid:29602631
- 33. Foster BJ, Platt RW, Dahhou M, Zhang X, Bell LE, Hanley JA. The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival. Pediatr Transplant. 2011 Nov;15(7):750–9. pmid:21883752
- 34. Gabay Gillie G, Tarabeih M. “A Bridge Over Troubled Water”: Nurses’ Leadership in Establishing Young Adults’ Trust Upon the Transition to Adult Renal-Care–A Dual-Perspective Qualitative Study. J Pediatr Nurs. 2020 Jul-Aug;53:e41–e48. pmid:32139233
- 35. Harden PN, Walsh G, Bandler N, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ. 2012 Jun 1;344:e3718. pmid:22661725
- 36. Jose K, Le Roux A, Jeffs L, Jose M. Evaluation of a young adult renal and transplant transition clinic in a regional setting: Supporting young adults and parents’ transition to self-management. Aust J Rural Health. 2021 Feb;29(1):83–91. pmid:33452848
- 37. Kocjančič D, Battelino N, Oblak M, Novljan G. Psychosocial impact of structured transfer of adolescents with kidney transplants to adult services: An interventional national cohort study. Pediatr Transplant. 2022 Dec;26(8):e14373. pmid:36000468
- 38. Nguyen C, Dew MA, Irizarry T, et al. Promoting medication adherence from the perspective of adolescent and young adult kidney transplant recipients, parents, and health care professionals: A TAKE-IT TOO study. Pediatr Transplant. 2020 Aug;24(5):e13709. pmid:32388916
- 39. Pollack AH, Snyder J. Reflecting on patient-generated photographs of the pediatric renal transplant experience. Pediatr Transplant. 2021 May;25(3):e13896. pmid:33111458
- 40. Szpotanska-Sikorska M, Pietrzak B, Wielgos M. Contraceptive awareness and birth control selection in female kidney and liver transplant recipients. Contraception. 2014 Oct;90(4):435–9. pmid:24909634
- 41. Wallace J, Yorgin PD, Carolan R, et al. The use of art therapy to detect depression and post-traumatic stress disorder in pediatric and young adult renal transplant recipients. Pediatr Transplant. 2004 Feb;8(1):52–9. pmid:15009841
- 42. Annunziato RA, Parbhakar M, Kapoor K, Matloff R, Casey N, Benchimol C, et al. Can transition to adult care for transplant recipients be improved by intensified services while patients are still in pediatrics? Prog Transplant. 2015 Sep;25(3):236–42. pmid:26308783
- 43. Bamford J, Wirz L. Piloting Psychology Annual Reviews as a Method of Measuring Psychological Distress and Quality of Life in Paediatric Renal Transplant Patients. Biomed Res Int. 2016;2016:1685362. pmid:27965973
- 44. Freier C, Oldhafer M, Offner G, Dorfman S, Kugler C. Impact of computer-based patient education on illness-specific knowledge and renal function in adolescents after renal transplantation. Pediatr Transplant. 2010 Aug;14(5):596–602. pmid:20214742
- 45. Ingerski L, Perrazo L, Goebel J, Pai AL. Family strategies for achieving medication adherence in pediatric kidney transplantation. Nurs Res. 2011 May-Jun;60(3):190–6. pmid:21522031
- 46. Korus M, Cruchley E, Stinson JN, Gold A, Anthony SJ. Usability testing of the Internet program: "Teens Taking Charge: Managing My Transplant Online". Pediatr Transplant. 2015 Feb;19(1):107–17. pmid:25495484
- 47. Korus M, Cruchley E, Calic M, Gold A, Anthony SJ, Parekh RS, et al. Assessing the acceptability and efficacy of teens taking charge: Transplant-A pilot randomized control trial. Pediatr Transplant. 2020 Feb;24(1):e13612. pmid:31743564
- 48. Kosola S, Ylinen E, Finne P, Rönnholm K, Ortiz F. Implementation of a transition model to adult care may not be enough to improve results: National study of kidney transplant recipients. Clin Transplant. 2019 Jan;33(1):e13449. pmid:30431669
- 49. Kullgren KA, Scholl P, Kidwell KM, Hmiel SP. Using an interactive water bottle to target fluid adherence in pediatric kidney transplant recipients: a pilot study. Pediatr Transplant. 2015 Feb;19(1):35–41. pmid:25388882
- 50. Pai AL, Ingerski LM, Perazzo L, Ramey C, Bonner M, Goebel J. Preparing for transition? The allocation of oral medication regimen tasks in adolescents with renal transplants. Pediatr Transplant. 2011 Feb;15(1):9–16. pmid:20880382
- 51. Pape L, Lämmermühle J, Oldhafer M, Blume C, Weiss R, Ahlenstiel T. Different models of transition to adult care after pediatric kidney transplantation: a comparative study. Pediatr Transplant. 2013 Sep;17(6):518–24. pmid:23730905
- 52. Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol. 2012 Feb;27(2):295–302. pmid:21823039
- 53. Weigmann-Faßbender S, Pfeil K, Betz T, et al. Physical fitness and health-related quality of life in pediatric renal transplant recipients: An interventional trial with active video gaming. Pediatr Transplant. 2020 Feb;24(1):e13630. pmid:31880043
- 54. Weitz M, Heeringa S, Neuhaus TJ, Fehr T, Laube GF. Standardized multilevel transition program: Does it affect renal transplant outcome? Pediatr Transplant. 2015 Nov;19(7):691–7. pmid:26260514
- 55. McQuillan RF, Toulany A, Kaufman M, Schiff JR. Benefits of a transfer clinic in adolescent and young adult kidney transplant patients. Can J Kidney Health Dis. 2015 Dec 15;2:45. pmid:26672951
- 56. Michaud V, Achille M, Chainey F, Phan V, Girardin C, Clermont MJ. Mixed-methods evaluation of a transition and young adult clinic for kidney transplant recipients. Pediatr Transplant. 2019 Jun;23(4):e13450. pmid:31062926
- 57. Prince M. Does Active Learning Work? A Review of the Research. Journal of Engineering Education 2004, 93: 223–231.
- 58. Cutilli CC. Excellence in Patient Education: Evidence-Based Education that "Sticks" and Improves Patient Outcomes. Nurs Clin North Am. 2020 Jun;55(2):267–282. pmid:32389259
- 59. Kreps GL, Sparks L. Meeting the health literacy needs of immigrant populations. Patient Educ Couns. 2008 Jun;71(3):328–32. pmid:18387773
- 60. Fredericks S, Martorella G, Catallo C. A systematic review of web-based educational interventions. Clin Nurs Res. 2015 Feb;24(1):91–113. pmid:24571963
- 61. Mellon L, Doyle F, Hickey A, et al. Interventions for increasing immunosuppressant medication adherence in solid organ transplant recipients. Cochrane Database Syst Rev. 2022 Sep 12;9(9):CD012854. pmid:36094829